Fear of choking and fear of falling in middle and end stage patients with Huntington’s disease

Kalkers, K. (2023)

Doctoral Thesis

The aim of this thesis is to explore fear of choking and fear of falling in people with Huntington's disease (HD) and their caregivers. Dysphagia and falls are common in HD and may lead to fear of choking and fear of falling. However, knowledge about this is mostly lacking, as well as knowledge about the relationship between cognitive and emotional factors and these types of fear.

The study confirms that fall prevalence (29% over a 30-day period) and prevalence of dysphagia symptoms (90%) are high. However, a prevalence of about 50% is also reported for fear of choking and fear of falling in people with HD. However, their informal caregivers report the most fear. Severity of dysphagia symptoms was a predictor of fear of choking, and anticipatory awareness of fall risks and gender were found to be predictors of fear of falling. In most individuals with HD, a combination of preventive measures was used.
Future research can improve both management of dysphagia and fear of choking and management of falls and fear of falling. Because questioning people with HD is sometimes difficult, due to speech and cognitive difficulties, diagnostic tools may be sought to facilitate this, such as wearable electronic devices.

• Huntington's disease
• Nursing home
• Accidental falls
• Dysphagia
• Choking
• Fear
• Cognition
• Awareness
• Caregivers

• All authors: Kalkers, K.
• Supervisor: Roos, R.A.C.; Schols, J.M.G.A.
• Committee: Achterberg, W.P.; Hilten, J.J. van; Middelkoop, H.A.M.; Veenhuizen, R.; Oosterloo, M.
• Qualification: Doctor (dr.)
• Awarding Institution: Faculty of Medicine, Leiden University Medical Center (LUMC), Leiden University
• Date: 2023-03-30
• ISBN (print): 9789464197358
• Sponsorship: CZ fonds